CindiRN wrote:My name is Cindi. I just got my results yesterday from the DNA health test I did with 23andme. I have 2 copies of apoe4, one from each parent. I am a nurse and have seen first hand the devastation Alzheimer's does to families and patients. I am in shock and scared. I am 50 and have no immediate family members with Alzheimer's so I had hoped it would detect no genetic risk when I did the test.
I am happy I found this group and I think it will be helpful for me to interact with others out there with the copy of this gene also.
Merry Christmas my friends!!
Merry Christmas to you also, Cindy, from someone who could be your older ApoE 4/4 sister! You initial reactions are exactly how I felt in February 2014 (just before Valentine's Day) when I saw my results on 23&me. Getting the results before Christmas is, as another member said, "Not funny!"
Here's some things to remember during this first days and weeks:
Genes are not destiny!
The single greatest association with a diagnosis of Alzheimer's is advanced age, not ApoE 4. In 2017, a meta-analysis of four large cohorts that was done as part of the informed consent for participants in the Generation Study of healthy Apoe 4/4s between the ages of 60 and 75, found that the population-based risk for a diagnosis of either Mild Cognitive Impairment (MCI) or Alzheimer's by the age of 85 is far less than studies based on referrals to memory care clinics:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2).
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts Those percentages may be much lower for you. They were analyzed for study participants between 60-75.
And even for my age group, it seems we may be able to change our destiny. I'm 67, and have been fully tested twice a year for almost 3 years and am still well within normal ranges (I used to test kids in school, and know what the normal ranges are.) So the often-cited "average" age of diagnosis of AD at 68 for 4/4s is based on OLD information!! I know of people in their 60's and 70's with ApoE 4/4 who are teaching law school, writing books, tutoring refugees, acting as ombudspersons in assisted living centers, driving across country, and reading scientific articles I could only begin to comprehend. All of us hope to prove that ApoE 4 is a risk that can be managed!
Unfortunately, many people who have been diagnosed with Alzheimer's, including those you have seen and those in my own family, had multiple unrecognized risk factors, including diabetes, uncontrolled high blood pressure, untreated mental health issues, unrecognized coronary artery disease or vascular disease, obstructive sleep apnea and high trans fat diets. Most didn't know that Vitamin B-12 is important to brain health, and Vitamin D-3 may be also. Few women of my mother's age thought it was "lady-like" to exercise enough to sweat, and so developed osteopenia and frailty. Many had limited educational opportunities and occupational challenges.
You have likely avoided all those serious risks!
Prevention in mid-life (right where you are) seems ideal for a long, healthy brain.
People on this forum are committed to the idea that we have many tools available to us to support our brains. Some of the best ideas for this are described in the
Primer, written by a physician who is also ApoE 4/4. She reminds us to be kind and patient as we adjust to this news.
I hope you take a few moments this holiday season to give yourself permission to feel on a rollercoaster, and to trust that you will feel more empowered and more ready to live life with purpose and joy very soon. We are all here to support you whenever and however you need!
Hugs from your genetic "sister".